Jacob Tullo is an extraordinary 13-year-old. He's an honor roll student, model big brother to his three younger sisters, and a friend to everyone he crosses paths with. He's an easy going guy with a great sense of humor, a calm demeanor, and wisdom beyond his years. He enjoys D&D, legos, pizza, and fishing. Jacob collects rocks, keychains, and "ribbons".
Jacob achieved his first two ribbons when he was less than a year old. Gold for childhood cancer and grey for brain cancer. By two he achieved lavender - the survivors ribbon. But his journey was just beginning. Jake was diagnosed with Li-Fraumeni Syndrome (LFS) - a predisposition for cancer. Although Jake had conquered his rare brain tumor (Choroid Plexus Carcinoma) he was at great risk for other cancers to appear throughout his lifetime. With the strong will of his mom, Kate, armed with endless research - Jacob began an intensive screening process for future cancers. Frequent ultrasounds, lab work, brain MRIs, and full body MRIs became a normal part of Jacob's life. Because of these screenings multiple tumors have been identified in benign stages in locations throughout Jacob's body. Unfortunately after remaining stable for quite some time, our family has recently learned the heart wrenching news that Jake now has two malignant tumors in his right hip. Upon informing Jacob of the results, one of his first questions was, "What ribbon now?". We've awarded him the yellow ribbon for sarcoma/bone cancer and the multicolor ribbon for multiples.
Needle biopsies have determined the tumors to be intermediate Chondrosarcomas. These tumors are tricky and we are remaining optimistic that we will find the right path that will work in conjunction with Jake's complicated genetic condition. We are seeking multiple opinions and options and although a path has not been fully determined - a surgery to remove these tumors and parts of his hip are most likely the first step. We know these tumors have a high rate of reoccurrence locally as well as in other areas of the body. Jake's already rigorous medical schedule has now become more intensive. Jake continues to set an example for all of us through his resilience and positive outlook. His insights on the upcoming surgery include turning to his mom and saying, "Isn't it amazing mom? I get to take my first steps all over again! You get to see me take my first steps again!".
Friends and family have always come together to help Jacob and his immediate family bear the financial burden of his needs. While we are now entering a new phase of Jacob's journey, we recognize that more help is required than we can provide without your help. Financial donations will go towards medical expenses including medical bills and supplies - as well as maintaining transportation for the 6 hour round trip commute to and from the hospital and providing Jake with adaptations for a more accessible home while he recovers. This assistance will also aid the family in maintaining daily bills so Kate can keep her focus on Jacob's care and his sisters. We know Kate makes every effort to encourage Jacob to LIVE with LFS not in spite of it, and we hope that through our efforts we can show her that same support and love to allow her to remain fully present with her children on this journey. Let's flood Jacob with the positive, loving energy that he's always putting out to others. Please join us in Jacob's journey and may all your good come back to you.